Sometimes, it’s a struggle

On Tuesday I will officially be admitting that I am disabled. But I still refuse to believe it.

Excuse me while I share a moment of weakness.

For me, this has been the hardest part of having MS. I don’t look disabled, and I certainly don’t act disabled. But according to the world- or at least my school- I am disabled.

Before I was sick I didn’t often ask for help. I’ve now found myself asking for it more often than I am comfortable with. I hate asking for help. I hate admitting that I need help.

On Tuesday I will be going to the disability resource center on campus to have it permanently on file that I have a disability. It’s not that I need anything from them, but it is just in case.

You see, two weeks ago I was in the hospital again. My neurologist is calling what happened a “neurological event,” but it’s things like this that really get in the way of my life. In short, what happened was that I went blind in my left eye (my bad eye) and then my entire mouth was tingly and numb- including my teeth, which sounds SO weird. Apparently, I’m supposed to ignore these events (because THAT will be easy).

As a result of the 16 hours I spent in the hospital that night, I missed work, I missed an appointment I was supposed to have that morning and I’ve missed school twice so far due to follow-ups. This is the kind of thing where I need someone behind me to say, ‘yes, this was a legitimate reason to miss’- teacher’s aren’t always understanding (mine have been so far. I may not be as lucky next time).

But apparently it’s not just to my school that I need to admit I am disabled.

As I was writing this I got a call from the patient assistance program with the medication I am taking for my MS.

When this whole thing began, I didn’t have insurance. I never really needed it; I was very rarely sick. When I went blind and we were told that there might be something wrong in my brain, my mom and I decided that it didn’t matter and we needed to go to the hospital- we would figure out what to do about the bills later. This led to (and even this is hard for me to admit) my applying for county medical services.

It’s a pain, but there is no way on my salary that I could have afford the, at least, $25,000 in hospital bills I had just from the first two visits. I haven’t had many problems with them as far as my MS treatment goes- until about 10 days ago.

I was informed by my pharmacy that my insurance denied my refill. After tons of calls, I found out that they will only cover 30 days of the treatment in one lifetime.. because THAT makes sense. We managed to get one more month approved on emergency because when we found out, I only had one shot left.

I’ve been waiting to hear from this program for a few days because they cover the treatment. So when the lady called today, I rehashed this whole story to her. After answering her questions about my financial state and personal situation her words were: “I strongly suggest you apply for medicaid.”

Basically, she made it sound as if they were going to deny me.

It’s not just the thought that I am going to be denied, but the word- medicaid. To be 27 years old and get told that you, basically, have to apply for something usually reserved for the elderly or the seriously disabled? It felt like she was telling me that I was incapable of taking care of myself.¬†Once again, I’m being forced to admit that 1) I’m disabled, 2) I need help.

Oh, and she continuously used the word “indigent.” I teach kids all the time about word connotation. That word has a negative connotation. Look up the synonyms on the merriam-webster website and you’ll find words like: beggared, beggarly, destitute, dirt-poor and penniless.

Let’s be clear on one thing: I am none of those things. I wanted to scream at her. I work. In fact, I work a lot (in case you don’t know, I work for the juvenile court schools). I have a position that does not offer insurance or full-time work. But 1)I love it and 2) It allows me to go to school. Oh, did I forget to mention that I am also a full-time student and the managing/ copy editor for my school’s paper?

The thing is, the medicine I am on costs just under $4500 per month! Almost no one could afford that. It doesn’t make me a “beggar” or as she preferred, “indigent.” It makes me normal, it makes me a college student.

But, I guess it goes back to that needing help thing. I know it was her job, and it was probably a part of her script, but it hurt. It just reminded me even more that I am disabled and I need help.

Wearing my heart on my wrist

I typically wear my heart on my sleeve. After Friday night, I now wear my heart on my wrist.

I impulsively asked my boyfriend at dinner if he wanted to do something crazy? Based on his look, he was afraid (and typically, he probably should be). I told him I wanted to get my tattoo. He thought I was insane (he usually does), but he never said no. He also never said yes. Somehow, we still ended up at the tattoo shop.

MS patients, for whatever reason, typically don’t talk about their disease. That’s literally impossible for me. I keep referring to this tattoo as a “conversation piece.” It’s an orange support ribbon on my left wrist. I want people to see it. I want them to ask questions.

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My favorite thing to be told is, “You don’t look/act sick” or, “You must be faking because you do all this stuff.” Seriously, I love when people think I’m not actually sick. It’s a teachable moment for me. I love telling people about my disease and explaining that, while I don’t look/act sick, at the end of the day, I’m usually a different person. That, at any given time I could end up in the hospital, or lose my ability to see or any various number of things controlled by my central nervous system.

I don’t want their pity; I want their awareness. I want this disease known. The more people who know about it, the sooner we may have a cure. I’m not suffering too terribly right now, but others are suffering every single day from it. They deserve this cure.

This tattoo is my scarlet A. Not the kind I will ever be ashamed of, but more like the Emma Stone character in “Easy A.” I wear it proudly. I want people to see it. I will be fighting this disease forever. Scratch that. I will be proudly fighting this disease forever. I figure, with this tattoo, I’m letting MS know that I’m not backing down from this fight. I don’t back down from a fight. I want the world to know that we can all fight this thing together. They just have to ask.

I wouldn’t wear my heart on my wrist if I didn’t want people to ask why.

What I know, what it means, and why this is actually a good thing

What I know:

I had a spinal tap on Monday. Let’s discuss how fun that was. Actually, it wasn’t bad except for the part where I fainted. It didn’t even hurt, so I’m not sure why exactly I fainted. It was after the first numbing needle went in. I got lightheaded and next thing I knew I was on the floor. I efficiently freaked my dad out; my mom was too chicken to go back with me.

The reason they use a spinal tap in the diagnosis of MS is for two reasons 1) Check for any viruses that I may have that could have caused this (things like Lyme Disease). 2) To check for the protein products that myelin (the protective covering for nerves in the brain- what is being attacked in the brain of an MS patient) breaks down into when it is attacked

They also did a blood test that day to check for anything else that it could possibly be (pretty sure this is the same blood test I had the first night in the hospital).

My neurologist called me on Thursday to tell me that it is definitely multiple sclerosis. I have a real diagnosis.

What this means:

She reminded me that it looks like I have had several clinically silent attacks. What this means is I have more lesions (so many that I’ve lost count; my chart says “multiple), but they are all located in areas of my brain not affecting life.

The lesions on this scan are the easiest to see

The lesions on this scan are the easiest to see

She told me that I didn’t have to start treatment right now if I didn’t want to. I can wait until my next attack.

That’s not me. I chose to start treatment as soon as I can. With the history of silent attacks, I don’t want to wait until my next obvious attack in a few years and have had 6 or 7 silent ones. The lesion volume will be higher, the attack could be worse and the disease will be further progressed. I would rather take something that may potentially lower the volume of lesions and potentially delay even the next silent attack.

Attack early and fight hard.

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I was given a third medication option by the neurologist who did my spinal tap. It’s an injection 3 times/week. I’m not excited about that part (except I have a wonderful friend who has volunteered to do it for me once in a while). I am, however, ready for this journey; there is a reason I have this. I don’t know what it is, but I’m eager to find out.

Why this is actually a good thing:

I keep getting funny looks when I say this is a good thing. It sounds ridiculous at first, I know.

Had the spinal fluid not contained the protein or a virus, we wouldn’t be here. We would have to start all over again to try to figure out what the heck is wrong. As okay with everything as I have been, I’m kind of over being poked and prodded every week (the upside of that is my pain receptors are dying a quick death and I am now able to fall asleep when I get my eyebrows waxed).

We had a plan before I even had the spinal tap. I knew what I was going to do. The future may have been unknown, but at least I knew how I was going to attack it. Without a diagnosis, I had no plan. Now that I have a diagnosis, the future at least has a path I can follow.

The other reason this is a good thing is that I realize this could be so much worse. Going into UCSD that first day, I had no idea what to expect. Then they started talking brain tumors. No matter how disappointed I get that life is turning out like this, I will ALWAYS remind myself of that first night when they thought it might be a tumor; I’m lucky to have MS.

Ending Limbo

I go to the neurologist on Wednesday, but I felt like writing an update since my neurologist called on Friday. This is what I know.

Here is the short version: I have MS, just not a diagnosis. Barring some kind of miracle, I am not moving to Texas.

Okay, I’ll explain. Diagnosing Multiple Sclerosis is complicated. From what I understand, patients must have two separate attacks on different parts of the central nervous system to be officially diagnosed. I have had one. There was no change in my lesions (for better or worse) except improvement on my optic nerve where this attack happened.

She says that she is sure I have MS based on the location and pattern of the old lesions.

She says that I have the option of starting treatment now, or waiting. To clarify, treatment will not cure it. It will not stop it. It won’t even make it go away. It’s not something I take for a short amount of time like with strep throat either. What the treatment does is suppress my immune system and potentially delay the next attack. She’s pretty confident that I won’t have another attack in the next month or even the next year, hence the lack of rush in starting treatment.

To answer your next question, no, I haven’t decided what I am going to do yet. I have done a ton of research, and I weighed my options. A part of me wishes she would have just said, “You need to start treatment and this is the kind you need.” Instead, I have the option of treatment and the option of two medicines. She did give me a lot of information to research. It was stuff she said might be over my head or beyond my area of interest. She was wrong. Reading that was a ton of fun though, let me tell you…

I am seeing a different neurologist on Wednesday. There was a scheduling complication and my neurologist is pregnant, so they scheduled me with her attending. I want to talk to him before I make a final decision, but I do know in what direction I am leaning.

When I first found out that MS was a likely diagnosis, and that people in Texas tend to suffer worse symptoms, the first thing I said to my mom was, “don’t for a minute think this is going to stop me.” The problem was I didn’t factor in the real-life aspect of this thing.

The reason Texas is most likely called off is because of the uncertainty. If something were to happen while I were in Austin, because we don’t know when it will happen, everyone is out here. I do have amazing people out in Texas who would be more than willing to help me, it’s not the same living with/ near my parents. My insurance is out here, too, and obviously that is crucial. And, most importantly, if I choose to start treatment, I will need blood tests monthly, and I will need to visit my neurologist quite often. I am insanely disappointed, but the hardest part is that I understand why I have to stay.

And, just to clarify things I’ve been asked:
– No, I am not disabled. Not in any way. My attacks will happen, and they will be mostly reversible. I am (and will be) able to take care of myself.
– I won’t be the person who you typically think of with MS. The media makes it look like I will slowly get worse. I will (most likely) be able to continue with life and most people will never know that I am sick. The only reason I am broadcasting it is 1) when I got sick no one knew what was wrong and it was the easiest way to update everyone and 2) I’m a writer and it’s what I do.
– Lastly, my eye isn’t changing much, but I have learned to function with it. I can see, but it is blurry. During the day, I mostly only struggle with knowing when a car’s brake lights are on, but that is only with my left eye. My right eye is fine. I can drive at night now. It’s almost easier than during the day. I am not a hazard on the road, and it is completely legal.